Quote:
Originally Posted by alice md
There is a type of myasthenia called limb-girdle= DOK7.
The way you describe your walking sounds as if this might be your diagnosis.
This is important, because there is pretty effective treatment for it.
Maybe if they can't send you to Mayo, they could at least send some tests?
Or they could try treating you with Ephedrine/ Albuterol.
Could you give more details of your symptoms?
alice
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Oh my, my symptoms. I am still learning what they all are. Sounds silly but I was never told something was a symptom. Even the eyelids. My son looked up MS symptoms years back and we fell over laughing at the picture of the guy with his eyelids low. Unbelievable. Just something that happened. My kids always thought I was just grumpy or really mad as my eyebrow lowered also.
Of course, drooping eyelid. Alot of drooping in my face, eyebrow as the day goes on (mostly on the right side). Effects my speech, severe at times. Tremors, hoarse with exertion-even standing. Breathing (they just got me a hosp bed to sit up) All my muscles fatigue from exertion, sitting-using my torso really is hard on me. effects breathing alot. Neck fatigue. bladdar at times.
Walking is harder as I go. Therapist showed me I use the muscle inside my thigh to walk, that is why my feet turn out first. Very unsteady hips, gate. feet drag the more I go. I am easier walking sideways. I use an elecwheechair for any distance. (Just got it now that I am not 'crazy')
I had trouble chewing since child. Trouble swallowing.
Here they looked and my esophagus is not moving the food thru. They stretched it twice, that lasts about a month for me (was great to eat! and feel it go down, I had no idea) I have had food come up after I fell asleep since I was a teenager. Guess it just sits there. Have to grind my food now-ewwww!
I appreciated the input of the therapists of the fatigue effecting thinking and memory. I struggle there. I struggled thru school. This is a big one all the time.
thats all i can think of right now.
I had not realized tests could be sent to the Mayo. I will ask about that at my visit to Wa Univ. I will ask what kind of CMG is diagnosed in my records. Tho, I am having a hard time finding my records to have them sent.
Many mention the nerve muscle tests causing pain. I did not feel much, had it twice. I feel that electrical feeling alot. The neurologist kept apologizing like it should hurt but it did'nt.
I was wondering, have you heard of anyone having symptoms with their heart along with their muscles with MG? Just wondering.